This essay highlights and discusses models of disability reflected in two separate articles (Appendices A and B). I will identify the models of disability they represent. Both have been recently featured in the Guardian newspaper and are stories on disabled people.
Appendix A was reported some years ago but continues to evoke opinion and has featured again recently due to a similar case. ‘Ashley’ is a profoundly disabled girl, who at six years old has a mental age of 3 months. Her parents decided on controversial treatment for her, as her condition would not improve. Ashley has undergone surgery to remove her uterus and breasts, and for three years she received hormone treatment to keep her weight and height low. It is thought that the surgery will prevent menstrual cramps and prevent any discomfort on her breasts from wheelchair clasps. By keeping her lightweight and small it will be easier for her parents to move her and continue to include her with the family outings.
This article represents the ‘Medical Model’ of disability as her medical disability is a central underlying aspect of the piece. Rieser and Mason (1992) suggest that medical approaches to impairment are to ‘individual objects’ and that they are ‘treated’ and made more ‘normal’. Her medical condition disempowers her and she is dependent on others to care for her. I don’t think that the procedures she has undergone have been to make her life more normal but for her to fit in with her parent’s approach of care. It could therefore be argued that her parents are by trying to include her in normal family practices entertaining a Social Model to her disability. However, their reasons could be seen as selfish, to help themselves.
Norman Kunc (1995), in an interview on disability and rights, suggests that many people in society wrongly assume that if you make life easier then quality of life will improve. Ashley’s life is qualitative; she likes to listen to music and is alert to her environment. If that is the case then are the procedures themselves causing distress and unnecessary discomfort to Ashley for the thought of doing good? This Rights model, more specifically Ashley’s human rights is very present in the article. It could be argued that she doesn’t need or require the treatment to medically improve her life. The Equal and Human Rights Commission (2008) suggest that human rights are the freedoms that we are all entitled to as a result of our shared humanity. I understand that she is unable to speak and is unlikely to have the mental capacity to make that decision but does that automatically transfer that decision to her parents?
The United Nations Convention on the Rights for a Child (1989) plays an important part of the Rights model for this text as I feel it both supports and opposes the parent’s actions. Article 23 concentrates on children’s disability by stating that ‘Children who have any kind of disability have the right to special care and support, as well as all the rights in the Convention, so that they can live full and independent lives.’ This could support Ashley’s parent’s’ motives. However, Article 3 states ‘The best interests of children must be the primary concern in making decisions that may affect them. All adults should do what is best for children. When adults make decisions, they should think about how their decisions will affect children.’ In this case are the parents doing what’s best for Ashley or themselves? This is a good example where the Rights model can get itself in a twist!
The author’s use of discourse in the material is a positive one, suggesting that the procedures that Ashley has undertaken is acceptable in conditions where it is beneficial to the subject. However, there is little positive use of language when describing Ashley’s condition. Curt Decker from the US Disability Rights Network criticises the procedure and calls for it to be banned. The author supports the action and that a more ethical approach on individual case basis is needed. I would have liked the parents to show an Affirmation model way of thinking by adjusting more of her environment and not her.
The second article is that of two disabled men interviewed about their creation of a successful disability lifestyle magazine. Their magazine differs from some others on the market as it doesn’t solely focus on the disabled rights issues. This piece very much reflects the Affirmation model as they are role models to others that a disability shouldn’t stop you doing what you want to do. They share experiences and discussions, provide advice and help to other disabled people. They both do not like to dwell on their impairments as they do not see it as important.
This reflects Shakespeare’s (1992) Social model thinking that suggests by mentioning biology, to admit pain and impairments risks the thought that disability is really about physical limitations after all and not the discrimination and prejudice that it really is. This shows their support of the Social model to society creating the disability to their impairment. Their plan is for the magazine to “to counterbalance the negative or patronising publicity about disability within mainstream media.” They highlight the media’s treatment of disability in very much of a Charity/Tragedy model and why the magazine can combat that.
The author supports the men’s positive achievement and although at times the piece may sound a little patronising, it is highlighting the way society treats disability. The piece could have easily focused on the men’s spinal muscular atrophy (SMA) condition but only mentions it on an informative basis.
I have found both articles interesting and thought provoking. Ashley’s case in question has caused much debate in the five years since it was made public. The procedures she underwent and the reasons for it have coined the term ‘Ashley Treatment’. I found Appendix B a more enlightening and inspiring read whilst I will question and discuss Appendix A for a while to come.
UNICEF Conventions on the Rights of a Child (1989)
Rix, J., Nind, M., Sheehy, K., Simmons, K. and Walsh, C. Equality, Participation and Inclusion 1: Diverse Perspectives, London, Routledge, Taylor & Francis/Milton Keynes, The Open University (Reader 1).